ALS Association looks to improve lives of those with fatal disease

An organization dedicated to improving the quality of life of folks with progressive neuromuscular disease is working to fund new and innovative technological solutions that will increase the quality of life for those with ALS.

The ALS Association – St. Louis Regional Chapter helps people with ALS live longer and stronger through a comprehensive network of in-home services, all while searching aggressively to find treatments and a cure.

“We have been making a difference in the lives of people with ALS for 35 years, coordinating services with care and compassion, ensuring that individuals receive the highest level of support possible to maintain their dignity and independence,” said Maureen Barber Hill, President and CEO of the ALS Association – St. Louis Regional Chapter.

ALS is a progressive neuromuscular disease. People with ALS typically experience a rapid digression from a normal, healthy life to one of total paralysis, where in essence, because their brain is still intact, they become prisoners in their own bodies.

The average life expectancy for someone with ALS is 2 to 5 years and there is no cure.

Only 10 percent of all cases of ALS are genetic in nature. 90 percent of the time, ALS strikes without regard to age, race, gender or socioeconomic status, Hill noted. She mentioned that military veterans, however, are twice as likely as the general public to die from ALS – no matter what branch they served in, or whether they served during peacetime or at war.

“ALS may be diagnosed specifically to an individual, but make no mistake, it is a disease that impacts the entire family,” said Hill. “Our programs and services are geared to help families remain physically and emotionally healthy and intact for as long as possible.”

The ALS Association provides folks with ALS items that are essential to daily living. Items such as wheelchairs, nutrition, and technology to assist speech, as well as counseling, case management, and caregiver relief programs that give ALS caregivers a break.

Hill said that it can cost nearly $250,000 a year in out of pocket expenses to care for someone with ALS in the latter stages of the disease. The associations’ programs and services – all free of charge – are all designed to give people with ALS the support they need to live life to the fullest. Each family is assigned a care service coordinator that helps them navigate their journey with ALS and guides them along the way.

“Our mission to discover treatments and a cure for ALS, and to serve, advocate for, and empower people with ALS to live their lives to the fullest,” said Hill, reiterating that ALS is 100 percent fatal. “We are the only national not-for-profit organization entirely dedicated to fighting ALS.”

So far they have helped make progress through research, advocacy, and family support.

The FDA in 2017 approved Radicava, the first new treatment for ALS in two decades. Five new genes have been identified since 2014. And two new anti-sense drugs are in development.

They have helped secure $1 billion in funding for ALS specific research, ensured that people with ALS have access to wheelchairs and complex rehab technology, and successfully advocated for passage of the Steve Gleason Enduring Voices Act.

In 2017, 703 people with ALS and their family members received guidance and support from a care services coordinator, caregivers in need of a break received 2,700 hours of temporary in-home care, almost 300 hours of counseling was provided for people with ALS and their spouses and children, 206 individuals received care from an ALS-specific multi-disciplinary healthcare clinic, and people with ALS who can no longer chew or swallow received 746 cases of nourishment. The association also established relationships with two new clinical partners, Washington University in St. Louis and John A. Cochran VA Center.

In 2018, The ALS Association launched Project Revoice, giving those in the ALS community the opportunity to record and digitally recreate their voices. This cutting-edge voice technology – in combination with Augmentative/Alternative Communication (AAC) devices – will give ALS patients the ability to communicate with their own voice, even after they can no longer speak.

“Our primary and continuing focus is on increasing the quality of life for people with ALS and their families. To that end, we are working to fund new and innovative technological solutions that will allow families to remain physically and emotionally healthy, together, safely in their own homes, and to help them to live a life beyond ALS,” said Hill. “We are committed to continuing our support of ALS caregivers through expansion of our in-home caregiver relief program, and we will continue to fight for and fund global research efforts to eradicate ALS entirely.”

The ALS Association – Greater St. Louis chapter was chosen as the Missouri Times nonprofit spotlight for 2019.

Alisha Shurr is a reporter for the Missouri Times and Missouri Times Magazine. She joined the Missouri Times in January 2018 after working as a copy editor for her hometown newspaper in Southern Oregon. Alisha is a graduate of Kansas State University. Contact Alisha at alisha@themissouritimes.com.

Alisha Shurr is a reporter for the Missouri Times and Missouri Times Magazine. She joined the Missouri Times in January 2018 after working as a copy editor for her hometown newspaper in Southern Oregon. Alisha is a graduate of Kansas State University. Contact Alisha at alisha@themissouritimes.com.